Ranting again

[SC49]

I saw the consultant today. It was the head honcho this time and not the same person that I saw last time. My day got off to a bad start because the bus didn't show up (icy roads) and it took ages to sort a lift to the hospital. I left the house at 8.30 am and it was about 11.30 befor I saw him. I was exhausted by the time I got in to see him and unfortunately, being exhausted makes me tearful.

He asked about how I was feeling and I described really severe fatigue, problems with concentration and memory and pains in my joints and bones. He said that he has experience of treating 100s of people with PBC and they don't present with symptoms like these - even in the advanced stages of liver disease. So my symptoms are not consistent with PBC and are probably a result of something else. The twin spectres of Chronic Fatigue Syndrome and depression rose again. I think at that point, I just gave up. I've no faith in any of the hospital docs now.

The good news for me (and probably for him and for my GP) is that I only have to go to the hosp every 6 months and I only have to get bloods done every 4 months.

The interesting thing was that he has written to my work telling them that I will be fit to return to work on lighter duties or reduced working hours. He wrote that before he ever met me.

[Hidden]

Hello SC49

I am in the exact position as you. I'm exhausted on a morning and get very stressed and tearful at work. I try to carry on because most people don't believe me. I also have joint pain in fingers and shoulders and poor concentration etc. my pbc levels are ok but I suffer everyday. Im signed off work at the mo hoping to get medical retirement but will I be believed when some specialists and GPs don't.

I told one specialist how tired I was about 3 years ago and he said he was tired and alot of other people too. it is so frustrating

Take care of yourself and do what you can to rest and cope.

Xxxx

[Cristina_Romania]

Really severe fatigue, problems with concentration and memory and pains in my joints and bones - NOT consistent with PBC, after seeing "hundreds of patients" ?......... PBC Foundation should know best, but from my humble knowledge the above, especially fatigue and joint pain are some of the most classical symptoms of PBC. You can find information about this even on the PBCF website.

[SC49]

thank you Sophie and Cristina. I am getting myself calm now. When I can breathe without swearing, I will be able to approach it in a more rational manner. I have found some academic articles and some other reasonably credible information about PBC symptoms. I am going to try and get my head together to ring the PBC foundation for a bit of guidance too.

What I think I am afraid of is going back to work when I know I can't do my job and then getting sacked. If I can't get the medics to agree that PBC is the cause of my symptoms then I will be seen as incompetent rather than ill. That will mean that, as far as work is concerned, I will be pretty much unemployable. It's quite a conundrum!

Thanks again

[mumofthree]

It makes you think what patients he's been treating!!!! You have these symptoms... if he thinks they are not related to PBC.....why doesn't he at least try and find out what is causing them but no they just fobb you off. Its so annoying....maybe these so called specialists should be named and shamed...they are supposed to help us not doubt us.

I have exactly the same symptoms as you have described along with very painful hands and feet and no they are not in my imagination either.

[SC49]

on the positive side, he didn't go for the other easy option - the woman of a certain age one! I've had more than one person suggest that it is my 'time of life'

I agree with you Mumofthree that they seem to just write people off. I think its partly to do with the whole health set up where they are all specialists and patients are just body parts or systems. It seems that the whole profession has forgotten how to see a whole person whose insides are all connected together!

[Val02]

You need to change consultant. It is really important that the people who treat you make an attempt to understand PBC. Is there another hospital within range that you could get to? Incidently after 4 years of joint/muscle pain etc I have now officially got osteoarthritis in my hands and feet, (diagnosed by rheumy), Im waiting for injections into my ankles, occupational therapy on my hands (to try and keep my fingers straight). Speak to your GP and try to get an appointment at rheumy - after 4 years ive finally got an explanation for my hands and feet.

[Hidden]

Altho' I as yet don't have worries of joint pains, I personally think due to the fact that with PBC our system can struggle with fat soluble vitamins like Vit D which is required for the bone it somehow figures.

I know back in 2010 before I was diagnosed with PBC I had a Vit D blood test and it checked out 'a bit low' (tho' I didn't know what this actually meant as I didn't have any figures at the time but got print-out later date to see that it was nothing significant as the hospital consultant wrote to me at diagnose). Last yr's Vit D check tested normal but once I was aware I made more use of being in the sun as previously working all day in a shop with lighting and a working lunch (!) at the time wasn't of any help (I quit that job late 2010 for other reasons not PBC).

As I've mentioned on here before, if mitochondria cells are known as 'energy cells' and we have antibodies that are attacking ours, then again to me it somehow figures that we can get tired and fatigued at times (some of you are worse than others as I read). I'm sorry to say I'm now one of the fortunates who doesn't actually feel so fatigued and have a solid 14hrs day before I start to feel like falling asleep but by that time it is normally 8p.m. and beyond.

I do think nowadays tho' a patient stating to a doctor that they are feeling tired and fatigued all the time can be a number a things but if a patient has a diagnose of PBC then it is more than likely due to that unless something else could be the cause. (Some days I start to feel like I'm flagging later afternoon, I know it is due to PBC as if I've had a night prior of the itch which I do get at night-time only (I've actually just gone 6 nights without any, not had that in awhile) then I wake up at intervals, hence start feeling tired next day through very broken sleep, all down to the itch of PBC.)

I also should imagine a lot of doctors 'write off' patients feeling tired as easier than if a patient said they were in pain.